The Ups, Downs, and Sideways Progress of a Woman Conquering Life with Chronic Illness

Friday, January 6, 2012

Fibromyalgia Support Group

When I first became ill in 2005 I was confused and misunderstood.
No doctor could tell me what was wrong with me, I was just depressed, they kept saying. And they treated me like a mental case for even asking for medical modification to my work schedule in order to keep my job. I
was sick and getting sicker and did not quite believe myself, that is how good they were at convincing me nothing was wrong, it
was all in my head. Or my pathetic excuse of laziness to avoid
having to be an adult and move forward in life was rearing its ugly head. So blame
and question myself I did. Thank God my husband did not. He believed in
me and loved me enough to stand beside me the entire time. The entire
"mentally unstable bitching, moaning, complaining, lashing out at him
because there was no one else to" time. I know how truly lucky I am. I
also know that I would not have made it through if not for his
unquestioning love and support. I hear tales of spouses leaving, sick
and tired of their sick and tired they vowed to love in sickness and
health. As money, work and lifestyle all flush down the rabbit-hole of
normalcy replaced by chaos, they bail. Leaving a person already so raw and
stripped bare completely alone. It makes me angry, and it makes me cry.

I
searched for support groups, someone to tell me I was not loony, there
were others that understood and had been there, were there, for crying
out loud! But every attempt, every turned-over stone left me so very
alone as no real network ever revealed itself. So I just gave up, and
got desperate, and threw my credit card at what my research showed was my best bet. Clearly this was not something I could live with so I set out to get over it. It, the still unnamed disease that was quickly disintegrating my body into a
mush of pain, exhaustion and fear. It did not hold a promise of any kind of
future. I was disabled and had to return to work! I was 28 years-old and had to get better. Better
from what, I still did not know. A private and specialized Fibromyalgia and Chronic Fatigue Syndrome clinic was my high priced saving grace. They diagnosed viral infections of
CMV (Cytomegavirus), EBV (Epstein-Barr Virus) and HHV-6 (Human Herpes Virus-6) as responsible for Chronic Fatigue Syndrome,
along with many other bacterial and fungal infections allowed by the breakdown of my central
nervous system from the viral infections. They understood and had success in
treating patients with this condition. They exploited the best of
holistic and modern medicine to their advantage and I did recover, strengthened my immune system so it flipped on top of the viruses and their symptoms did not rule my life. I took a
drug that was a major risk, Valcyte. A cancer-causing
carcinogenic, it was a powerful anti-viral and no joke. And there was no guarantee it would work, for it was still in clinical trials. I had to make a
decision, was potential quality of life now worth potentially cutting my life
short at the end? Hell yeah it was! And it worked, after two rounds and
tons of other drugs and a bunch of other stuff. But by then Fibromyalgia had settled in, my nerves damaged from such a long journey
of untreated infection, and went wild in an epic battle. I emerged as victor and got it under control. That is where I sit today. In remission from
CFS and managing my Fibromyalgia. My life is not what it was before, but
is so much better than where it had been.

If I can
offer any words of encouragement to my fellow Fibro friends it is to
keep searching. Search for the support of those you know and love,
search for the friendship of others that understand and are in the
trenches with you. Search for doctors and medicine to heal and manage your
daily life, work and responsibilities. Search for a way to laugh a
little bit every day and find a way so this illness does not control you. Oh
so much easier said than done, I know, but as long as you are living a
life, it mine as well be a life worth living.

Thanks for joining,

Leah

This blog was originally published on 8/13/10 and is an excellent summary of my journey with Chronic Fatigue Syndrome.

8 comments:

It's so weird that you posted this today. I just found a private clinic that specializes in FMS and CFS that has an office in my state and I am trying to decide whether to pursue it or not. I've had fibro and probably CFS also for 25+ years, so I wonder whether there's a point now. It's been so long that whatever this is has ruled my life that I wonder if there's really any treatment that will help me.

Of course they don't take insurance and I doubt seriously my insurance will cover it. But this is so weird that you've posted about it because I am seriously considering it to try to improve my functioning and cognitive problems.

Since I was little I had been complaining about my joints and "phantom pain". The doctors had told my mom there was nothing wrong with me and so that is how it stayed.

I was 20 when I felt like I couldn't take it anymore. I went to get help from "doctors". They told me there was nothing wrong with me, they said it was in my head, they told me I needed to have more fun. One even said I had a brain tumor, another said I was retarded because my face was round. I gave up when they tried to commit me. I can't imagine what they would have done to a proactive patient who wasn't as naive and passive as I was.

Here I am 35 years old and I just got the diagnosis of RA and Fibro last year. From an MD turned acupuncturist no less who has helped me to be able to walk again. My blood test results were so high the lab techs ran them again to be sure. But I guess it was all in my head...something so simple, right?

Your site was the first I found about Fibro. I thank you for it. Because even though my doctor finally gave me the validation I needed, you put the human touch to it. You've been through it too.

Wow, I love that you have a spouse who is so supportive! I came home & am laying in bed doing some FB catchup before calling it a day. Rough one - I do loss prevention and had a runner today, and yes my old butt chased him.... Which is why I am in bed, cuts & bruises from my trip to the asphalt while in pursuit, & muscles, etc all SCREAMING at me. How I wish I had someone to support me even if he believes it's all in my head. Idk what to do... It makes me feel unloved & a target for smart remarks. How will this HELP me?? Nothing I say gets through. This is pushing me deeper into depression.... Suggestions anyone?? Please....

Leah you are so lucky to have a husband stick by you. I am currently in the process of ruining a 6 year relationship. Notice how I blame myself. He does try very hard, but my depression has spiraled out of control since losing my job of nine years last June. He is sick of me crying all the time and angry with himself for being mad about it. And I blame me for all of it. I know I didn't get sick on purpose, but I just hate myself because my life is ruined and I know I am ruining his too. I really want to leave and spare him from my negativity.

Nicole I spent years trying to get my husband to leave me because I believed I could not possibly be worth all the effort, all the bad. It has hurt him very bad because he loves me and is willing to stand by my side through anything. If you have a man that loves you hang onto him and fight for him with everything you have. I was a miserable bitch for years. Now life is a bit more manageable and my miserable bitch is not out nearly as often. Struggles change, evolve, grow. A good man can come only once in a lifetime. You can stop NOW, today, and change your point of view, if you want to. Move forward to a different outcome. Scroll down and read "The Precious Present". Good luck my friend ;)

Thanks Leah. Just curious, but does your husband see a counselor or go to any support groups to help deal with the stress? I want to hold on to him, but I don't think I can do it alone. We both need support and I am not getting any from my friends. I just don't understand. I've told them that I need them but they just drift away. I cannot put all my troubles on him but I'm heartbroken about my friends, etc.

I suffered for 17 years until just after the birth of my second daughter, when I was diagnosed with FMS...since, I have been an meds that have made my quality of life amazing...Recently, the anxiety has become unbearable, followed by all the other symptoms I suffered with before my diagnoses. I am finally going to my doc on Mon but I honestly don't know what she'll be able to do for me at this point. The anxiety I'm experiencing before work every day is downright debilitating...I can't go to the grocery store...I lose everything I put down, and the constant headaches and joint pain is unrelenting. Even now, I have to go to the bank to deposit my rent, and am frozen...I don't know how blogging works, so I may not be posting this in the right place. I was just curious if anyone can give me any feedback about what my doctor can actually do for me...I've lost hope...

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About the Author

Disabled at the age of twenty-eight by the mysterious illnesses chronic fatigue syndrome and fibromyalgia, five years later I survived two life-threatening strokes. Clinging to life and determined to change my trajectory, I embarked upon a journey to reclaim my lost health. Never easy but always worth it, I write to share the reality of both embracing and overcoming a life most unexpected. Thank you for joining my thorn-riddled stumble through the complexities of living with chronic illness.

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Disclaimer

The author of this blog is a patient. All information contained in this blog pertains to my personal experience and is for informational purposes only. It is not a recommendation or suggestion for any other patient. Please consult a doctor for diagnosis and before beginning or stopping any treatment or medication.

Copyright Notice

All material, written and conceptual, contained within this "Chronicles of Fibromyalgia" blog are under copyright and the sole intellectual property of the author. Any use or reproduction of these materials is strictly prohibited without the expressed written consent of the author."Chronicles of Fibromyalgia" "The Ups, Downs, and Sideways Progress of a Woman Conquering Life with Chronic Illness" "The Fibromyalgia FunHouse" "Purple Pain Code: Lilac-Light, Mulberry-Medium, Amethyst- Awful" All Materials Copyright 2010-2017 Leah Tyler.